New to site. Help!

[mynina2]

I am new to sight as far as posting but read the posts to see if I can get any ideas how to help ease my symptoms! I have really been suffering since June with this. My doctors are puzzled and doing tons of tests. I have showed Dr & Dermatologist the black things coming out of me and they said they are fibers from my clothes! I know this isn't the case. I am so afraid of my family getting this! I have tried some of the suggestions other have given. Some have helped a little. I am not getting as many sores but still itch constantly and the black fibers are still coming out of me. Is anyone's hair falling out and if so any ideas on how to stop this please? It is depressing me even more and I am trying to stay strong but so tired of fighting this. My Dr. wanted to put me on Zoloft but that makes me worse. Has anyone tried that Clean Green. I read up on that but don't know if it is a farce or something that might help. Any suggestions would be helpful at this point. I don't know how much more I can take. I am so depressed and cry all the time. I have no appetite and lost so much weight. Down to 100 lbs. Does anyone have a coating on their tongue and no taste? Also if anyone lives in the Upstate NY area do you know of any Drs. that deal with this? Everyone I have gone to treats this lightly and I know they think I am nuts. Please someone tell me what might help!! Going to take a salt bath now to help with this itching!! Thank you for letting me vent. My family just thinks I am stressed and losing it. All in my head!!! My body says different with all the sores and scars!!! God Bless You All and thank you again.

[tcmgpt13]

I have some doctor lists which are for M doctors. These are outdated lists, but some of these doctors may still be in practice. There are some doctors on the list in NY state (unsure of locations as not familiar with the towns except NYC). Pm me if you are interested in their names. You can also obtain some names on lyme sites, as many doctors who treat lyme will also treat M symptoms (since many have both). Welcome to MDR. I hope you continue to read posts in the Morgellons Treatment section. There is a lot of information there, much of it is useful. Also if you can try to get some tests run for some of the infections some with M symptoms have tested positive for, such as herpes viral infections and lyme. Treating these infections may help other symptoms improve. If you have lyme that could account for hair loss though as with many symptoms there could be more than one reason for that. Do you have lesions and fibers?

quote=mynina2;87576]I am new to sight as far as posting but read the posts to see if I can get any ideas how to help ease my symptoms! I have really been suffering since June with this. My doctors are puzzled and doing tons of tests. I have showed Dr Dermatologist the black things coming out of me and they said they are fibers from my clothes! I know this isn't the case. I am so afraid of my family getting this! I have tried some of the suggestions other have given. Some have helped a little. I am not getting as many sores but still itch constantly and the black fibers are still coming out of me. Is anyone's hair falling out and if so any ideas on how to stop this please? It is depressing me even more and I am trying to stay strong but so tired of fighting this. My Dr. wanted to put me on Zoloft but that makes me worse. Has anyone tried that Clean Green. I read up on that but don't know if it is a farce or something that might help. Any suggestions would be helpful at this point. I don't know how much more I can take. I am so depressed and cry all the time. I have no appetite and lost so much weight. Down to 100 lbs. Does anyone have a coating on their tongue and no taste? Also if anyone lives in the Upstate NY area do you know of any Drs. that deal with this? Everyone I have gone to treats this lightly and I know they think I am nuts. Please someone tell me what might help!! Going to take a salt bath now to help with this itching!! Thank you for letting me vent. My family just thinks I am stressed and losing it. All in my head!!! My body says different with all the sores and scars!!! God Bless You All and thank you again./quote]

[annesco]

I live in upstate NY but have no luck with doctors here. I am relying on this forum and the members here along with my own research. Your best bet is to use this site to formulate a protocol that helps you to keep your symptoms at a minimum and then try to find a doctor who will do true testing for lyme, as if you mention lyme disease many will take you more seriously.

Diet has been a big help for me, as I have eliminated sugar, animal protein, alcohole etc. from my diet. Sugar seems to make the symptoms worse. I also follow a pretty strict alkaline diet, which has helped as well.

Folks here are very helpful. Try not to let it get to you too much, but focus on finding the treatment that help. It will get better...

Keep the faith!

[tcmgpt13]

I am surprised you have not found any doctors in New York state or some of the surrounding states who would help you. I know of at least one in New York (not in the city) who is a member of ILADS who treats with natural supplements and herbs (Cowden protocol) and also uses drugs as needed. He's pretty well known too and lectures at the ILADS conferences. There are also a few others who are not in the city itself. I have the lists for lyme and morgellons doctors, so anyone who is interested may contact me for names. I will be more than happy to help any who are interested. Even though the lists are old I know some of the doctors on them are still in practice. Names are not listed here to protect these doctors who are often targeted by medical boards in their states for treating patients who have been ignored by conventional doctors.

I have learned through time that not all doctors are ogres. Sometimes their treatments shorten at least aspects of Morgellons. If I had waited any longer to take some chemical anti parasitical drugs I would still be pretty sick. I think that natural is great and prefer that route, but after reaching a plateau in my own case I had to look elsewhere. Natural dewormers are not strong enough for some of what is experienced as far as parasites. I am so glad I relented about this as sometimes a little medication can make a huge difference in how someone feels. Not that I think heavy use of pharmaceuticals is good, but sometimes some can help. One recent surprise for me was how my fatigue lifted somewhat from the use of doxycycline prescribed for an ear infection. This was learned just by using a conventional doctor when that symptom occurred. This drug also stopped the severe heartburn I had from an intestinal blockage two years ago. Amazing, as normally this drug causes that symptom in some people. So you never know.

There are doctors out there who will listen if the focus is kept on symptoms and not the insistence that what you have is Morgellons. Maybe it is...and maybe it isn't. There have been some former members who were found to have other disease processes. In their case it was wise that they decided to see a doctor to be tested as one had chagas, a very serious parasite disease. Natural methods will not control this infection as even drugs are not able to control all symptoms. The same with schistosomiasis which someone else reported. And there has been another person who had lupus. All these diseases would need to be found through testing. Then of course there is always the lyme which many of us seem to have. And herpes infections also are frequently involved and can also be tested for too.

I think one of the most dangerous things anyone can do is to lean for medical advice on a bunch of unknown (as to motivations and illness status) people from a forum who claim they all have a particular disease. In this case it is a disease for which no commonality can be found. The current knowledge about it leaves us wondering if it is just a form of super lyme overlaid with various parasites. We simply do not know. Before relying totally on natural methods and the suggestions of others for treatment it would be good IMO to check out any possible infections or diseases which may be involved in symptoms through some testing. In most states a doctor is needed to achieve that goal. If there is a way to do it that is what I would suggest pursuing before doing anything else. It may save time, your life and a lot of money down the road too.

quote=annesco;87583]I live in upstate NY but have no luck with doctors here. I am relying on this forum and the members here along with my own research. Your best bet is to use this site to formulate a protocol that helps you to keep your symptoms at a minimum and then try to find a doctor who will do true testing for lyme, as if you mention lyme disease many will take you more seriously.

Diet has been a big help for me, as I have eliminated sugar, animal protein, alcohole etc. from my diet. Sugar seems to make the symptoms worse. I also follow a pretty strict alkaline diet, which has helped as well.

Folks here are very helpful. Try not to let it get to you too much, but focus on finding the treatment that help. It will get better...

Keep the faith!/quote]

[Clara]

I just answered in length to another newcomer to this site. But wanted to let you know that when I first got this I tried everything under the sun, both natural and doctor prescribed - and nothing worked. I finally found that green Bananna Boat aloe stopped me from getting more lesions and made it possible for me to sleep some. Hope it helps you!

God Bless! Clara

[beebee]

1. Keep PH above 6.5 get test strips, cut out sugar, alcohol, wheat and carbs
2. Saltwater/Vit C as on Lymephotos.com it put 1 teasp canning salt and 1 tsp 5000mg vit C into 4 oz pure warmed water and consume with a meal 5 days on 2 days off at 1st. will cause diarreara and herx reaction so need to be home for the 1st week, then do as needed. I now only take it a couple of times a month or when consuming a forbidden food.
3. QUAD zapper or other frequency zapper
4. Transformation or Logo Nutritional type of enzymes
5. Ebsom salt baths, mix in borax or hydrogen peroxide, dont dry off, let naturally dry.
6. FarInfrared Sauna, I just bought the 225.00 box kind. I salt soak one day then do sauna the next with a really long shower afterward
7. Eat high iron foods as this disease will make you anemic, Iron pills will only put more stress on your kidney. Iron Skillet is good.
8. Milk thistle, Gota Kulo - need to protect liver from all the stuff being flushed thru.
9.Colloidal Siver if start getting the "Greenies" I use Silver Mountain Minerals Ionic 240ppm

If cant take that much salt, just leave it out but if your body can take it, it is great help

If PH too low, put 1 teaspoon of baking soda in glass of pure water, can add salt. Apple Cider Vinegar is also good. See earthclinic.com

Treatment will take at least as long as you have had symptoms. I have been treating for 2 years and now almost have it in control. Been to 4 MD and the most they could tell me was to take Iron pills from Walmart.

We are In Mexico this week and spending an hour out in the ocean then have aloe vera plants to put on the 2 small lesions now present on my arm